Monday, December 09, 2013

It's SOOO Hard, But They Make It SOOO Easy

Being the parent to special needs kids is different.  The benchmarks are always rearranged, the challenges are sometimes overwhelming, and the frustration felt by both child and parent is very, very real.  Everyone knows this.

What people never tell you about special needs parenting is this:

1)  You doubt yourself  Because those benchmarks have to be realistically marked differently, you have nothing to use as a basis of comparison.  This may sound good, and it is on one hand, but on the other hand you just never feel certain that your child is where they ought to be.

2)  You cry for your kids.  Often.  You feel their pain at being different, you feel their defeats, you feel their desire to be like everyone else.

3) Endless advocating takes enormous amounts of energy.  You expend so much in trying simply to get them the services they need, that you are depleted much of the time.

4)  No one knows how depleted you are, you don't want to complain, and you muscle through.  You smile a lot, you try to remain as positive as you can, when sometimes you are crying out inside that you just want it to be a smidgen easier.

5)  You find yourself not participating in conversations when they turn in a certain direction.  You don't want to be questioned about your 15 year old 7th graders of whom you are enormously proud, but whom others look at and see only "DELAY" written across their foreheads.

6)  You speak another language, and few understand it.  You have complicated brain dysfunctions to try and explain, some of which even the experts can't really explain.  After so many years, you just "know" and give up trying to help vaguely interested bystanders "get" what your child is dealing with.  You have children who sometimes have multiple disabilities, and you refrain from details because people give you "the look", as if you are making it up to justify your kids' failures.

7)  Your kid can be smart as all get out, but others never look long enough or hard enough to see it.  They see the misspellings, the inability to accurately recall months of the year, the stuttering, the incomprehensible sentences.

I could go on and on.  I have learned so much these past several years, about myself, about others, and about our children.

The past few days have been ones in which long buried concerns arose once again.  I have no idea what it is that triggers such things, but every once in a while it will spring up and I will find myself unable to push aside the concerns about futures, about whether I am homeschooling them well because it often looks so different than public school out of necessity.  Working on the logic curriculum and seeing what appears to be something so simple be SO incredibly hard may have triggered it.  Watching Kenny be unable to use logic to narrow down where a library book is on a single section of shelving may have triggered it.  Trying to help Olesya figure out a basic mathematical problem at about a 3rd grade level and seeing her blank stare may have triggered it.

There are days when it is almost impossible for me not to feel like a complete failure.

I know that watching Angela have a very rare meltdown this afternoon enhanced it.  She and I were at the kitchen table, each working on our own projects...hers writing and me paying bills.  All was quiet as others were scattered around the house doing math, when I glance up to see  Angela's chin quivering.  Concerned and having no clue what brought this on, I asked her what was upsetting her, thinking that maybe she was writing about her past or something that brought up scary memories.  It happens around our house sometimes.  She couldn't even talk for a few moments, then finally said, "I don't know why this is so hard.  I don't know when it is going to get easier.  I know what I want to say but the words won't come out.  I am tired of sounding like a baby in my writing.  When is it going to get easier?", then my usually tough as nails daughter melted as the tears flowed from frustration.

It can be so hard.  In fact, it is so hard almost all the time that I even forget what easy looks like...I just take it for granted that we are going to have challenge after challenge, day after day.  How does a mom not cry at moments like that?  I haven't figured that one out yet, and instead just let the tears come, as maybe seeing my own heartache for them helps the tiniest little bit to feel less alone in their experience.

It can be hard to hang in there, day after day, week after week.  Kenny has slipped back a bit, we are doing some reading fluency work...again. Tonight he looked a little defeated as he talked about TaeKwonDo patterns that he just can't remember, and he said with his head hung low, "It feels like I never even learned them.  I can't remember anything."

Joshie's emotions came up this weekend during a conversation, as he cried but found himself unable to speak about what was bothering him.  We sat patiently, he found his voice eventually.  I fear so much for his future relationships, that he will be unable to communicate emotional issues well enough to have a healthy dynamic and feel "heard".  How I pray for special mates for each and every one of these kids.

Olesya's stuttering is surprising even her at how bad it is, and how suddenly it came back.  She can't talk without huge pauses right now, and we are all stymied by it.  Matt is the only one who, at the moment, has nothing really going on for him.

Yes, it can be sooo hard, but in many ways it is sooo easy.  They are gentle spirits, each of them.  They are willing to do the hard stuff, and repeat it over and over.  They rise to the challenge every day.

And sometimes, God speaks through them to give me the encouragement a disheartened and worried mom needs. Last week, the kids had a major history test.  It was HARD, 10 essay style questions, and several definitions that had to be matched.  Dominick compared it to an SAT and said he was glad he wasn't my student...and he wasn't laughing.  Today, about an hour after I sat down with Angela and held her close, I began correcting the tests.  Kenny's was first.

Oh, how my heart lifted as I read his answers!  I saw clear thinking, I saw developing writing skills, I saw deep knowledge of the topic at hand.  That young man has come so far, and even if he doesn't work on par with any other 15 year old, he is absolutely making progress I never thought would be possible three years ago.  Homeschooling saved him, I saw that so clearly on his paper tonight, and not only will he one day graduate high school, he will have a diploma that is meaningful and true...not a "special ed" diploma, with a watered down education backing it up.

As I was inwardly giving him a mental "high five", feeling like at least one of my kids wasn't feeling the full weight of failure today, I got to the last page of his test, where he had typed me a note that he never could have known last week I would desperately need at that very moment.  Oh, it had some grammar issues, and a misspelling or two, but it was perfect in message, heart and faith.  God uses that kid over and over again to deliver hugs to me, and to lift me up when I am feeling low.  Here is what Kenny wrote for me, a treasure I will always keep:

What have I ever done to deserve this?  What is it that has allowed me to be so blessed??  I must ask myself that question a hundred times a week, for THIS is what I see far more than the hard stuff.  It may be Kenny this time, but every single one of these amazing, resilient, courageous kids reaches out and squeezes my heart over and over again.  

How can I ever cease to give them all I can?  How can I not walk in double appreciation each and every day, that not only did God bless us with children when we might have had none, but that God blessed us with THESE particular children?  It IS hard, but it IS easy with this sort of love flowing constantly through and around us all, and I really and truly have no idea how it happened or where it came from.  Not only is it offered in such generous portions to both Dominick and I, but to all who circle us.  Today I saw Joshie be so attentive and nurturing to a 70 something year old very developmentally delayed gentleman who works at the food bank.  This man appears to be completely illiterate, unable to read or understand numbers.  But Josh teamed up with him of his own accord, encouraged him with such kind words and gentle guidance as he helped this man feel a sense of worth and accomplishment.  Josh didn't shy away, didn't make fun of him or find him "weird".  Instead, Josh enveloped him in love and acceptance and my heart swelled.

What I am learning is that special needs also equals special gifts.  That was one I had never anticipated.

1 comment:

Lindsay said...

Kenny may have many real struggles - but he also has a gift for writing. Beautiful words, written from his heart. I would definitely not ignore Olesya's speech problem (from the long pauses you describe it sounds maybe more like a stammer than a stutter). There can be a genetic cause, could be to do with rapid speech development, could be lots of things. But best outcome is always to seek a speech-language assessement and work on therapies. good luck.